I was late diagnosed with Autistic Spectrum Disorder a few years ago. It was not a surprise to some who knew me well, and a complete shock to others I had managed to bluff successfully for years. One of the most surprised was me. I had known there was something odd about me and that I didn’t fit in with the world, but had never pinned down precisely what it was.
I listened to a Radio Four programme on the morning of Tuesday 8 September about Autism in women, presented by comedian Helen Keen who herself received an adult diagnosis. It focused on those with a late diagnosis of the condition and all sorts of things made me sit up and think. Hardly surprising given my own experience I suppose.
Now I am not a woman and I have no desire to horn in on someone else’s unique experience. I know women have had a hard time being diagnosed with the condition. Historically it was considered almost exclusively a male problem and this has left many women struggling.
I sympathise as many men were in the same position for years. It may seem hard to believe that a boy with ASD could be missed these days, but these days are not that long. My doctor, when my mother in despair at me not sleeping sought his help, said, correctly as it happens, ‘Well not all children need the same amount of sleep’. He may have been correct, but it triggered no other questions or tests and I went on being ‘odd’ but otherwise unnoted. My fascinations with particular subjects and objects, difficulty to mix easily and make and maintain friendships, oddly specific memory feats, problems with cloth textures, food textures, light levels, noises (terror of vacuum cleaner noise) all elicited no particular response from others. My parents thank goodness were sensible and supportive and loving but others labelled me awkward, soft, picky, stand-offish, ‘precious’ and just plain weird. I liked girls, although I learned that little boys were often not supposed to because they liked ‘rough’ game and girls didn’t. I tried to conform, but I would often prefer to sit and read or paint or write. A certain suspicion of not being a proper boy began to coalesce around me as well as everything else.
The programme mentioned that trans and to a lesser extent gay people, seem to be overrepresented among those with ASD and I confess I wondered for some time if I was trying to suppress something, perhaps a homosexual nature. I didn’t think so but there was a period, well after my first emotional and sexual relationships with women when my head throbbing confusions about why I was so internally messed up about life in general led me to consider any and all possibilities.
I cannot imagine the difficulty of being LGBTQ and trying to cope with undiagnosed ASD. Ethnic minorities in Britain are another group that have particular difficulties, not just the obvious difficulties of minorities in western cultures, but because sometimes their own religions and cultures make it difficult to accept western psychiatric approaches to mental health differences.
I’m not that surprised that at the time I was growing up no-one spotted the signs in me. In the late 1950s and 1960s autism was still generally characterised as a boy sitting mute on the floor banging his head against a wall. Aspergers was not something for northern England. Maybe poncy southerners with their fancy ways could have savants wandering around, but we knew awkward little buggers for what they were.
Recognition of female autism is an even more recent thing and it has been more difficult for women to get a diagnosis. Thankfully this is changing. One of the problems associated with recognising and identifying the condition in women is ‘masking’. This is the successful pretence to be normal, watching, identifying and copying neurotypical behaviour to fit in and hide one’s true reactions and feelings. Women are very good at this apparently.
So am I.
I never felt as if I understood the world or belonged in it as it was configured. I went for years knowing there was something different about me but not having the faintest idea what it was. Lots of other people knew I was weird too, but they became fewer as I used a lot of energy and brain power to ‘fit in’. It was enormously hard work and it took its toll. Eventually I had what I have always thought of as a sort of mental breakdown. Someone on the programme characterised it as an autistic breakdown. I’d not thought of it like that, as at the time it happened I had no diagnosis. On reflection I have had several of these crises during my life and they have come at times of often apparent great triumph, academic or career, but the build up of contradictions became too much for me.
I only recognised the symptoms in me for what they were during a parental session to help me deal with my son who has ASD. I ticked nearly every box. I was very cautious, I knew I was in an emotional period with the concerns over my son but it suddenly all felt like it made sense for the first time in my life. I went to my own GP. He didn’t laugh as some do according to the programme, but he did ask ‘are you sure you want to bother?’ when I asked for a diagnosis.
Often in the past I would have shrugged and said ‘probably not’ in order to fit in, all rufty tufty chaps together. This time however I was so galvanised by my epiphany in the parental awareness course that I said ‘Yes. Yes I do’.
He was very good after that and referred me and I had an initial screening then a few sessions with a Consultant Psychiatrist and she rapidly recognised the symptoms and the cause of them.
So what did diagnosis do for me? Was it worth it? In practical terms I suppose the answer to the first question is ‘not a lot’. I haven’t used it in job interviews, career progression or anything like that.
So was it worth it?
Oh boy, yes!
Someone in the programme said her diagnosis meant the end of self blame, and that is what happened to me. I retain all the frustrations of not being able to parley my intellect into financial or career success to the level I might otherwise have attained. I feel aggrieved at those who mistook the ability and the desire to look deeply into questions as lack of incisiveness, or diffidence.
So what did the diagnosis do to make it worthwhile?
That loss of guilt.
I had a problem, still have it, but it wasn’t laziness, repressed homosexuality, abuse, diffidence, lack of application, superciliousness, arrogance (how can you be arrogant and diffident at the same time?) or any of the things other people accused me of or I wondered about myself. It turned out to be none of them, nor anything I could do a lot about. I carried the burden of trying to fit in for too long to shrug off all that accreted camouflage overnight.
But I am aware of there being someone else, the real me, my authentic self, still under it all. I’m trying to excavate him. It may be too late to build a career on the real me but at least I am aware I exist and I am learning to lose the need to mask myself.
Someone said that diagnosis can be the end of support from outside agencies and it can be very lonely after the process ends. They said that finding other autistic people to share with was one of the autistic joys, and more people need to access support groups.
I don’t think I really feel that but I guess it may help others.
I haven’t worked out whether I like being alone because it is me or because other people impose demands on me I find too taxing. I like people. But I need space and silence a lot of the time too. Finding the balance is the difficult thing.
One thing about the programme as presented rang a small alarm bell though.
I’m completely in favour of helping those who have difficulties through lack of fair play, whether female, trans, black or other victims of so far unrecognised bias. What I don’t want the neurotypical world to do is to appropriate our newly won right to our authentic ASD selves and begin to segregate us along divisive lines imported from their world that should not exist.
That’s what the neurotypical world is waking up to right? No differentiation of esteem on the basis of things that don’t count about how human we are. Let’s not paint ourselves into the false divisions they created. We have enough problems in a neurotypical world without masking ourselves with their hangups. We have ASD and we should stand together to explore our authentic selves; female, trans, white, black, male without letting those markers divide us.